Sibling Story - Ella, sister to Jake
Ella won 'Young Citizen of the Year 2022' at the Love Barrow Awards for the support she provides to her twin brother, Jake, who is living with Dravet Syndrome. Mum, Stephanie, explains why.
Every single parent out there who has more than one child knows what an important role siblings play to each other but families with children with additional needs feel the significance even more. They're not given a choice in this, it isn't a career they choose to step into, it's something they have no say in and are born into but as each and every one of our Dravet families will agree, they are invaluable.
Ella is Jake's twin sister and they share a bond like all twins and siblings do which is why his pain is often her pain. It's easy to forget about the sibling when your whole world is rocked with a diagnosis of Dravet. Your Dravet child has to be at the centre of all your decision making as it's what you have to do to keep them safe. They often monopolise all your time and energy as caring for any child with additional and complex needs is time consuming and exhausting so finding time for other family members, work and friends becomes a constant juggling act. Without meaning to, there are always times when the sibling has to play second fiddle. It's why it's important to recognise what they do and provide them with the support and gratitude they deserve.
Jake had his first seizure at 5 months old and at that moment all our lives changes irrevocably. We went from being a family who were always here there and everywhere and loved spontaneous last minute plans to suddenly having our lives completely controlled and dictated to by Dravet Syndrome. Every trip or activity had to be carefully planned and risk assessed. How close was the nearest hospital, would the activity bring on a seizure, would Jake be able to access the activity, could we take all his equipment and so on and so on. Something as simple as a meal out or soft play or even a trip to the park became a challenge and we knew that no matter how much we didn't want it to, that impacted Ella. Her favourite park became a no go zone as Jake would always have a seizure there, we never did figure out why, shopping trips were a definite no as Jake hated them and would get worked up and have to leave, swimming and physical activities were limited to 20 minutes as Jake would tend to seize if we stayed any longer, the beach was a huge seizure trigger, parties, cinema trips, too many things to list.
Reading this you might just say take her on your own but we couldn't because Jake needs 2 adults with him at all times and unfortunately we had no family to step in. We knew she was missing out, we battled our sadness and guilt but throughout it all she never tantrummed, never questioned it, she quietly accepted it. When Jake broke most of her toys or would physically hurt her even though he didn't mean too she didn't become resentful or hurt him back. When she had to watch or listen to Jakes favourite song or video over and over again she didn't complain and when trip after trip got cut short or cancelled because of Dravet she never voiced her disappointment, she just got on with it, she still does.
We moved house to be nearer to a town and hospital for Jake, we selected schools that would be better for Jake, we chose types of holidays around meeting Jakes needs and whatever we did and whatever we still do she accepts and supports.
A parent's view
As the parent I have gone through every range of emotion towards Dravet; denial, anger, resentment, confusion, sadness and mostly fear but throughout it all she has been a constant source of support not just to Jake but to us. Jake has been in hospital so many times and each time he was whisked in I would have to leave her, for days sometimes weeks. I know she missed me, I know she hated us all being apart but she accepted it. She accepted spending weekends and sometimes birthdays in a hospital and throughout it all her only concern was Jake getting better.
I don't know how we would get through it without her and I know, to her brother, she is his best friend and idol. She has taught him so much and without a doubt is the reason he can do so many things. We are eternally grateful for everything she does and whilst we wish she could have had a more normal childhood and have been shielded from all the things she has been through we are filled with pride at the young lady she is growing up to be.
As they have both got older we make sure she has time out from him where we can from after school clubs to time with friends but her home life will always be monopolised by Jakes condition. We have accepted this and thankfully so has she.
We know she bears the scars of the things she's seen and been through and her anxiety at leaving him after lockdown with Covid was a huge challenge for her, but Jake's condition has also taught her so many things too. As they get older there will be different challenges and battles. We saw her recently get sad as some children who laughed at her brother whilst he was dancing and singing. As they grow up and the gap widens between them developmentally it will become more of an issue, but we know she will continue to protect him when she can and empathise with those around her who are different.
Jake has taught her kindness and empathy as he has taught us all, and helped mould her into the caring, wonderful young lady she is. A while ago someone asked her if she had a magic wand would she cure Dravet and her reply made us both smile. She said she would get rid of the seizures and all the parts that hurt Jake and make him ill but she wouldn't want to get rid of all of it as it makes Jake who he is and unlike her friends brothers he still cuddles and kisses her and always will, and we couldn't help but agree with her.